NM attorney juggling athletics as ALS wears on him - Houston Chronicle
ALBUQUERQUE, N.M. (AP) — "In 2005, I was 45 years old, married 15 years to the love of my life, Jean Bannon," Doug Schneebeck says by way of introducing himself. "Jean and I are both lawyers and had jobs we enjoyed. We skied most winter weekends, traveled frequently, and said a prayer of gratitude every night. We wondered, and sometimes even worried out loud, whether the other shoe had to drop at some point and mess up our perfect lives."
The shoe that dropped a year ago was a doozy: A diagnosis for Schneebeck of ALS. Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, affects nerve cells in the brain, limiting and eventually stopping the ability to initiate and control muscle movement.
As Schneebeck puts it, it's like old age — only faster and meaner. And like old age, no one gets out of it alive.
Schneebeck was nearing 50 and a commercial litigator at the Modrall law firm, when he started having trouble speaking. No one else seemed to notice, so he kept his worries to himself.
Next, a bicep twitched. He had trouble saying more words. So without telling Jean, he started seeing doctors and getting medical tests. Eventually, Jean noticed.
"How many beers have you had?" she asked him one night when he slurred his speech. He hadn't been drinking, and they both started to worry something serious might be wrong.
Schneebeck, a former sprinter and hurdler, turned 50 two days after he got the ALS diagnosis in July 2010. Three weeks later, he finished the 100-mile Leadville mountain bike race, a brutal ride that climbs roughly 14,000 feet, in a little over 10 hours.
You might think that would be the last Leadville — or any century ride — for a guy with a degenerative muscle disease that has a life expectancy of two to five years. But when The Albuquerque Journal sat down with Schneebeck this week, he told the newspaper he intends to close the book on his life as an athlete in an unusual way.
"I'm saying goodbye to things, not by looking at pictures," Schneebeck told me, "but by experiencing them one more time."
So Schneebeck has kept riding and racing, even as his upper-body strength has deteriorated, his ability to chew and swallow has taken a serious hit and his left hand has stopped cooperating entirely.
In March, he started training for the 2011 Leadville race and started a website — to call attention to another mountain bike race he was organizing in Angel Fire and to raise money for research into a disease that has no treatment and no cure.
At www.osohigh.com, Schneebeck's six months of blog entries sum up the weird world of ALS, where you stay the same but your body surprises you every day.
Along the way, he has detailed the slow but methodical retreat of his strength, explored the indignity of being passed by a 10-year-old on a mountain climb and shared with the world the intricacies of taking a leak when you no longer have the strength to pull down your bike shorts (a brake lever has never come in so handy).
Schneebeck's blog has raised more than $100,000 as friends and strangers donate directly or seek sponsorships for their own athletic pursuits.
And through the blog, Schneebeck has shown ALS does not affect two important parts of the body — the heart and the funny bone.
"In terms of physical abilities, every day with ALS is a bit worse than the one before," Schneebeck wrote on March 11. "Of course, what this means is every morning when you wake up you are about to experience the best day of the rest of your life."
April 10: ". while voluntary control of muscles will evaporate, pain and other sensation signals are not disrupted. So, how does that play out? Can't move; can't talk; and your butt itches. Nice. This is why I try not to look forward too much."
And earlier this month: "I realize that part of what happens is ALS takes a piece of life at a time. So, you grieve the loss of your fingers in February; the loss of your shoulders in April; the loss of drool control in October. ."
When he started writing his blog, Schneebeck didn't guess that his most important audience would be his teenagers, 14-year-old Abby and 16-year-old Jimmy, both student athletes at Albuquerque High School.
"It's opened up a channel to talk about it," Schneebeck said, "and to ask questions. I think we have a healthier environment around ALS in our house now."
Schneebeck completed his final courtroom trial in August and is retiring. His wrestling matches with the buttons on a dress shirt have been chronicled in hilarious detail on the blog, but it's more his difficulty speaking that led to the decision to stop practicing law.
In the year since his diagnosis, Schneebeck has also lost most of his ability to type and moved to a voice-recognition software to write. Some simple tasks, pulling on biking gloves, for example, have become time-consuming, herculean tasks. But his legs have remained strong. He has trained on his road or mountain bike — or on a tandem with Jean — nearly every day. And he's competed in more than a dozen bike races, including another shot at Leadville earlier this month.
As ALS continues its assault, Schneebeck's race times get slower (he quit 62 miles into Leadville this year) but the joy of riding does not slow down.
"It would be easy to say I can't race at my (previous) level, so I'm done," Schneebeck said. But biking, he said, "is one of the handful of things that when I'm doing it everything is good. I feel normal."
There is the experience of having ALS, of being increasingly trapped in a body that doesn't work. And then there is the experience of loving someone with ALS.
Jean has good days and meltdown days as she envisions a future without a partner in the front seat of that tandem bike.
"He's my best friend," she told me. "I can't imagine breathing without him. I can't imagine our kids not having their dad. I can't bear to see him not be able to do things."
Jean asked her husband recently, "Aren't you mad?"
Doug's answer was, "Not yet.
"My view," he said, "is I can get mad and it won't change anything and I'll waste a perfectly good hour or day or week."
The other afternoon, in the midst of a dark day that involved Schneebeck cleaning the business suits out of his closet and a meeting with a lawyer to firm up the couple's wills and estate plan, Doug and Jean took time to get on the tandem bike and hit the North Diversion Channel trail.
Another cyclist passed them and commented, "I've always wanted to do that. You guys are so lucky."
"'You guys are so lucky,' " Jean repeated. "And you know, we are."
That went into their gratitude prayer that night.
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Information from: Albuquerque Journal, http://www.abqjournal.com
02 Sep, 2011--
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